I can stop MAC antibiotics in June!

Im just starting on this journey. Sounds like you only took 2 to start and not the Rifampin? But you still had good results. Why do they sometimes choose a 3 day regimen and sometimes a 7 day regimen ?

@rits That is wonderful news. I am on the same “cocktail” as you. It has had to be tweaked a few times, but apparently there is a light at the end of this very long tunnel. I couldn’t be more thrilled for you. Congratulations! Irene5

@joanden I started on this journey in 2016. I was diagnosed a bit earlier. In the beginning I was on all three meds and seven days a week. Since I had lost 18% of my body weight, I struggled a great deal with that treatment. It was switched to the three day, but I still struggled. For me and for many others Rifampin seems to be the culprit. Studies have shown that there is little difference in results if you eliminate one. My understanding, and I am not a doctor, is that if you can tolerate two and then add Arikayce there is a higher “cure” rate. MAC can always come back, but after reading what @rits posted today I am encouraged as well we all should be by her positive result - or I should say “negative” result really:). irene5

I lasted two doses of rifampin before having a very bad reaction. There are ongoing studies designed to show whether rifampin is necessary. My doctor told me that it was too late for her to enroll me in the study but she was so sure if the outcome that she did not substitute a third drug. Until the studies conclude whether rifampin is required, the protocol calls for three drugs.

I think most patients start with 3x per week but if that doesn't work after a period of time, we are moved to 7 days. Another drug like amakacin or more recently Arikayce may be added.

Good luck to you. I hope the drugs work quickly for you.

@rits Wonderful news, something we can all appreciate right now . I am so happy for you.

@rits This is great news! I haven't been on the site for awhile, but you're the first person I've heard of who reports clear having used the same protocol as me. I too am MAC free after 3 sputums tested within a 5 month period. I initially was on the Big 3 in 2018, stopped for a few months, then started again. Added Aricayce inhaled for 3 months. Eventually stopped the Rifampin, but remain on Azithromycin and Ethambutol. The one thing I hope to continue is nebulizing 7% saline as I have never had a problem with it. Especially now with Covid, I can't help but think its cleansing my lungs! Follow up w doc in a month and we'll see what's next med-wise. It is possible to convert to negative and I'm so pleased to hear your good news!

@rits Congrats Rita!! I will add you to my 'mac free' list. (you too Margie) Yes, I really have one. Those that go on the list serve as a beacon of hope for others. I hope that you will continue to stay on with our group, we need to see positive results. I remember when you first came onboard with Connect, your struggles were many. You have come a long way baby! I hope that you are celebrating your victory. Great BIG hug! -Terri

@joanden Hello Joan, and welcome to our group. Can you share more about yourself? How are you feeling?

@irene5 We are going to get you there one of these days!

Joan, you can click on my photo icon to read my succesful treatment plan. There are other possible options if it agrees with the suseptibility test. Please feel free to ask questions about mac or on how to navigate this site.